Chronically Ridiculoushttps://chronicallyridiculous.com
Life Experiences and Advice for Living with chronically Ridiculous illnessesFri, 01 Sep 2017 00:19:05 +0000en-UShourly1https://wordpress.org/?v=4.7.8122859817Sexism & Chronic Illnesshttps://chronicallyridiculous.com/index.php/2017/08/31/sexism-chronic-illness/
https://chronicallyridiculous.com/index.php/2017/08/31/sexism-chronic-illness/#respondFri, 01 Sep 2017 00:19:05 +0000http://chronicallyridiculous.com/?p=1156In the 19th century, doctors were likely to write off most symptoms women suffered as hysteria, “exaggerated emotion or excitement.” Less has changed from those days than you might think. Sexism of our society still profoundly influences how women with chronic illness are treated by their doctors and their friends, family, and colleagues.

My Experience

Christmas Eve of 2012 I went to the emergency in excruciating pain. I was no stranger to kidney stones and knew without a doubt that my pain was due to the worst kidney stone I had ever had to date. Because I have severe daily chronic pain, I am very good at hiding the amount of pain I am in from others. It comes naturally now to hide how much pain I am in, which causes problems with doctors taking me seriously.

At the hospital, I told the doctor that I was sure I had a kidney stone, but she didn’t believe me. “I have had giant male linebackers in here with kidney stones. They were curled up in the fetal position bawling. There is no way you are in enough pain to have a kidney stone.” She went on to imply that I shouldn’t have come to the emergency room and that I was overreacting. Unsurprisingly, my test results proved her very wrong; I had a large kidney stone that warranted surgery. I received no apology.

Even this female doctor had the sexist idea that large men must have had a higher tolerance than I did. I had to insist on further testing because my pain wasn’t taken seriously. If my doctor had her way I would have gone home without any treatment or tests.

It wasn’t the first time and it wasn’t the last that my symptoms weren’t taken seriously due solely to my gender. Unfortunately, this sexism doesn’t just come from male medical professionals. This sexism is so ingrained in our medical system that it comes from most doctors no matter their gender.

Support Systems

Everyone, from doctors to co workers are less likely to take women’s symptoms seriously. Therefore, women are less likely to get support in any and all forms through their illness. This sexism affects women’s ability to build a support system through their chronic illness. This is a dire problem, as having a support system through chronic illness is vital and sometimes is the only thing that keeps people with chronic illnesses alive.

The sexism behind this lack of support is quite simple. When men get sick, everyone assumes that all their symptoms are real. Men are seen as stoic, strong, and tough so if they are showing signs of pain, the pain must be legitimate. Women are seen as sensitive, weak, and dramatic so if they are showing signs of pain, they must be overreacting and not be in that much pain.

These attitudes are common throughout our entire society and usually affect the people who would make up the support system for women with chronic illness. However, when these people think that women’s symptoms aren’t real and that they are just overreacting their ability to be supportive is diminished. Disabled women without a support system are also more vulnerable to abuse.

Employers often have these attitudes ingrained in them as well. This can make it more difficult for women to get reasonable accommodations for their illnesses, keep them from being hired, or even get them fired.

As a result of these attitudes, women end up having their very real pain and symptoms invalidated everywhere they turn- their doctors, boss, coworkers, family, and friends. These experiences can be dehumanizing, alienating, and can result in even worsened health due to stress.

Sexism and Research

There are many conditions that are more likely to affect people who are born female. These illnesses generally receive less research, funding, and attention than those that affect primarily men or both men and women.

For example, autoimmune disorders, which affect far more women than men are studied far less than conditions that affect men. Many autoimmune disorders, which can be life altering and even deadly, have few to no treatments. Alternatively, erectile dysfunction has multiple treatments. Erectile dysfunction does not negatively affect quality of life as severely as autoimmune disorders do and erectile dysfunction is certainly not life threatening.

This is a great example of the research gap as it shows that men’s ability to have sex was prioritized over women’s lives. Women deserve the same opportunities for health that men do.

Additionally, studies of illness are skewed to study how male- bodied people are affected, but how the illness affects female- bodied people is often understudied. Many times this research gap means that treatments aren’t as effective in female-bodied people as they were in the male-bodied people that were studied. This means that the research gap is sometimes literally deadly to women.

There are many problems with the medical health system, but how sexism affects women’s health is one problem that has sinister consequences. Women can die from neglect due to a doctor not taking their symptoms seriously. Women can also suffer preventable deaths caused by depending on a treatment that wasn’t studied properly in female- bodied people. It is also more difficult for women to get support through their chronic illness due to this sexism. When this support fails them, they are more vulnerable to abuse. Navigating the medical system and living with a chronic illness is hard enough without the added difficulty of sexism.

]]>https://chronicallyridiculous.com/index.php/2017/08/31/sexism-chronic-illness/feed/01156Healthy People, The Spoon Theory Doesn’t Apply To Youhttps://chronicallyridiculous.com/index.php/2017/04/20/healthy-ablebodied-spoon-theory-doesnt-apply/
https://chronicallyridiculous.com/index.php/2017/04/20/healthy-ablebodied-spoon-theory-doesnt-apply/#respondThu, 20 Apr 2017 12:50:18 +0000http://chronicallyridiculous.com/?p=1149Note: I use able-bodied and healthy interchangeably as well as chronically ill and disabled interchangeably, but there are differences.

As humans, we all have limitations. We can only go so long without sleep, rest, food, and water. We can only bear so much psychological stress. To have these limitations is to be human. Just because you have limitations do not be fooled into thinking you understand what it is like to be limited by a chronic condition.

The spoon theory was written by Christine Miserandino to give able bodied people an idea of what it is like to have a chronic illness. Basically, it asserts that living with a chronic illness means that you have only a set amount of spoons. This image might help.

The spoon theory is a handy tool, of course with limitations, but it has helped me explain chronic illness to many people who just weren’t getting it. However, I am seeing a trend of people without physical or psychological conditions talking about their spoons like the theory applies to them. It absolutely does not.

Before and After

I have been severely disabled for the past 8 years, but I have distant memories of what it is like to be mostly healthy. Running out of energy and mental capacity as someone without a chronic condition is not even close to the same as running out of spoons. When healthy people push past being tired there are usually only short term consequences. Healthy people have an amazing capacity to function sleep deprived, work through the day without food, participate in physical activities without much pushback, and deal with psychological stress to a much greater degree.

Healthy, I used to be able to work 2 jobs, dance, take all advanced classes, talk to my boyfriend, eat 3 square meals, cook occasionally, and shower every single day. Every once in awhile I would take on too much, but the consequences weren’t all that bad. Usually, I would just need to sleep a few extra hours or scale back (while remaining active) to get over the cold I got. More often than not, just a day later I was able to go right back to being busy and productive. There were no lasting consequences for me pushing past my limits like there are now.

Now, I commonly have days where I have to choose between cooking, showering, working, or socializing (if I can even do any of these at all). When I do more than I am meant to in one day I sometimes see a decline in my health for weeks. A year and a half ago I tried to go on a short hike without much rest beforehand. Pushing past that limitation, just that one day, is something I still feel every single day after all this time. I injured my ankle by pushing past my limitation and since most foot and ankle specialists don’t know what EDS even is, I am still in pain every single time I walk on it.

Consequences

When healthy people push through sleep deprivation, worst case scenario is that they get a manageable cold. When disabled people do, they can end up unable to get out of bed for weeks or give them an infection that can land them in the hospital.

When healthy people work throughout the day without food they can become tired or cranky, but usually, everything is fine once they eat again. Not eating as someone with a chronic condition can result in fainting, hospitalization, and not being able to get out of bed for days.

When healthy people push past their physical limitations and walk that extra mile or do that difficult workout they will likely end up getting tired and then sore the next day. When people with disabilities do this they can end up injuring themselves severely, worsen pain so that they cannot function the same for up to months, or get so hurt they end up in the hospital.

Psychological Conditions

To be clear, people with psychological conditions deal with spoons too. The consequences of pushing past these types of limitations can be equally severe as physical conditions and often end up being physical.

Hard Decisions

I don’t know any healthy people who have to chose just one: showering, working, socializing, cooking, eating, or cleaning on a daily basis because of physical limitations. But that is what it is like to have a chronic condition. To make these decisions, with severe chronic consequences, is to have spoons.

Disability Is Not the Same As Being Able-bodied (Who knew??)

I used to hear all the time to just “push through the pain.” Healthy people think chronically ill people’s limitations and consequences for ignoring those limits are the same as theirs. A lot of what it comes down to is healthy people thinking that chronically ill people’s symptoms are the same as their own.

Being tired is not the same as fatigue.

Being sad is not depression.

Aches and pains are not the same as severe chronic pain.

Having an infection is not the same when you have a chronic illness.

]]>https://chronicallyridiculous.com/index.php/2017/04/20/healthy-ablebodied-spoon-theory-doesnt-apply/feed/011499 Ways To Support Your Family Member With a Chronic Illnesshttps://chronicallyridiculous.com/index.php/2017/02/16/7-ways-to-support-your-family-member-with-a-chronic-illness/
https://chronicallyridiculous.com/index.php/2017/02/16/7-ways-to-support-your-family-member-with-a-chronic-illness/#respondThu, 16 Feb 2017 19:48:29 +0000https://chronicallyridicilous.wordpress.com/?p=730People with chronic illnesses need all the support they can get- especially from their family. Here are some tips for truly supporting them.

1. Don’t Just Support Strangers, Support Your Family

Most of my family are generous caring people- especially towards strangers. I regularly see them support children they don’t know and throw fundraisers for complete strangers. I am glad they do this and in that way, I am proud of them. However, to see that they can and do support others sends me the message that I am not worthy of their support. That my problems aren’t worth supporting.

At a certain point, it felt obvious that I am not important and my problems are inconsequential in their minds. It isn’t even just about supporting me. If saving the sick children is important to my family, what about the sick kids with the same condition as me? What about the ones with less understood conditions? The ones who take an average of 6 years of pain and struggle to diagnose? There is room to support all of us- not just the people with better known and better-understood illnesses.

Seeing them support strangers so completely and not supporting me at all is far more disheartening than you can imagine. I don’t know if I should interpret it as not caring or as not knowing what to do, but shouldn’t they ask?

2. Listen To Their Warnings of Serious Genetic Conditions

A few years ago I was diagnosed with Ehler’s Danlos, a genetic condition where affecting collagen and therefore joints and muscles. People with EDS often have severe pain and a lesser quality of life.

The fact that I have EDS means that it is highly likely that other family members have it as well. However, when I have warned my family that they should see if they have it (for themselves and for having children) I have been ignored.

No one wants bad news, but ignoring me makes me feel like they don’t value anything I say or take my health concerns seriously.

Ignoring my warnings isn’t just hurtful to me- it is irresponsibly putting my family’s possible children at risk. The decision to have kids when you have a severe genetic illness should be an informed one.

There is an arrogant and ignorant attitude of “that could never happen to me” surrounding illness that is just going to end up hurting my family further. Try to be conscientious of this attitude and take your family members warnings seriously. Hear them out. They need to be heard.

3. Provide More Than Empty Support

By actions, I often feel poorly supported by my extended family, but by words, I am very supported. So many family members have told me they are “here for me” or “to let them know if I ever need anything.” It is a nice sentiment, but unfortunately, too often that is all it is. When I actually reach out for support, I am too often ignored.

With a chronic illness, people often tell you they are there to support you because it makes them feel better about themselves rather than actually helping you. They even delude themselves into thinking they are legitimately helping support you with words, thoughts, and prayers. If you actually want to be supportive, reach out to your sick loved one and ask what you can do to help. Listen to them rant. Ask them how they are.

4. Talk To Them, Not About Them

I haven’t talked to most of my extended family in years. When I got sick they stopped talking to me. Now they only talk to other family members about me.

Asking people how they are lets them know you care. Even if you say something wrong or don’t know what to say, most of us can forgive a lot (see below), and intent has a lot to do with how you are received. If people genuinely are trying to be supportive I am more willing to see that effort instead of the things they do wrong.

5. Educate Yourself on Our Condition

Understanding is a huge part of being able to support people through a chronic illness. The single best thing that has helped me get the support I need is educating the people around me. That is a big part of the reason I write articles for Chronically Ridiculous and why I am working on a book on POTS.

However, education does no good when no one will read it or seek it. So learn about your family member’s condition. Learn about life with a chronic illness. Read the spoon theory. Their illness has become a huge part of their lives; understanding it is paramount to being in their lives and supporting them.

6. Think & Educate Yourself Before You Speak

I have heard or heard about a lot of ignorant and sometimes cruel things my family has said. Some have been apologized for and I do not hold a grudge- I just hope to share my experience. However, more have not been apologized for and I doubt some family members even gave it a second thought that their words could be hurtful.

It is your fault you had a blood clot in your lungs and almost died because you took birth control. You are being punished by god- that is why you are sick.

Modern medicine shouldn’t have kept you alive because overpopulation is a big problem.

God never gives you more than you can handle. You must be overreacting.

Maybe you should try to take less medicine.

I cannot even imagine what you are putting your parents through.

You are too young to be sick.

Ugh did she really faint again?

You are lucky you get to lay around all day.

Maybe if you just tried not thinking like you are sick you would feel better.

Mind over matter! Toughen up!

Every single one of these things likely would be left unsaid if people educated themselves before speaking, but they didn’t and now I have to live with their cruel words.

7. Never Thank Others For “Putting Up With My Illness”
Our society looks down on the disabled; they see us as burdens to humanity. Dealing with this attitude has been the hardest things about having a chronic illness. Having my family treat those around me as if they are doing me a favor by being my life has been terrible.

For example, in a past relationship, my boyfriend of a year and I broke up because we fell for other people. My sister didn’t talk to me about the breakup or ask if I was okay. Instead, she reached out to my ex and thanked him for putting up with me for as long as he did. It has been a couple years and I still feel heartbroken when thinking about it.

So let’s clear this up- having a loved one with a chronic illness is hard. No one is denying that. That being said, no one is doing me a favor by being in my life. I am loving and care so deeply about the people I love; I would do anything for the people I love. My chronic illness has taught me a level of compassion and empathy I rarely see in others. I am smart, funny, and basically all-around awesome (and modest too, can’t you tell?). I am worth keeping in people’s lives- chronically ill or not.

Most people who are chronically ill are worth having in your life and acting like they are not is one of the worst things you can do to them. Most of us are consumed by the worry that we are burdens already. I have known numerous people who have committed suicide because they felt this way.

Everyone has problems and baggage that make it harder for loved ones to keep in their lives. The real problem occurs when we fail to see people as more than their baggage.

8. Invite Them.

Even if you don’t think your family member’s health is good enough to come to the next family gathering/ reunion- invite them. They know their health and what they are up to better than you can.

The fact that we consistently miss out on social gatherings is such a difficult thing to deal with. Too often, we stop being invited to things and then have nothing to do when we do feel up to these gatherings.

Recently, I found out a large chunk of my family had a reunion that no one mentioned to me. Even though it wasn’t the first time this had happened, I was devastated. I don’t know if I could have gone; I do know that I wanted the opportunity to try.

9. Reach Out To Them Again.

I have a condition that affects the pressure in my brain, Pseudotumor cerebri. When the pressure gets too high, my brain reacts as if I have a brain tumor even though I do not. I often cannot remember things. I have chunks of my life that I don’t have a single concrete memory of. I also have a condition, POTS, that leads to me consistently not having enough blood pumped to my brain.

With my combined conditions, I forget a lot. I am sure there have been instances of people reaching out that I cannot remember. Instead of assuming you are being ignored because your family member hasn’t replied, try again. A lot of my family members regularly get upset with me for not responding to things that I simply don’t remember. Keep trying. Don’t give up on us. Be our memory when we don’t have one left.

]]>https://chronicallyridiculous.com/index.php/2017/02/16/7-ways-to-support-your-family-member-with-a-chronic-illness/feed/07305 Responses to “Other Disabled People Agree You Should Be Doing More”https://chronicallyridiculous.com/index.php/2017/02/09/do-more/
https://chronicallyridiculous.com/index.php/2017/02/09/do-more/#respondThu, 09 Feb 2017 16:23:00 +0000http://chronicallyridiculous.com/?p=1126I’ve had so many terrible things said to me because of my chronic illness.

“It is your fault you feel like this.”
“If you try hard enough/ do more you won’t still be sick.”
“If you just prayed harder god wouldn’t still let you be sick.”

Needless to say, chronic illness has made for a difficult and painful few years.

Unfortunately, these comments never stop. Every time I think I have finally surrounded myself with supportive people they say something hurtful that proves they don’t understand my chronic illness one bit. I can’t help but wonder if I will ever find someone who really truly gets it. Maybe it isn’t entirely possible to understand chronic illness unless you’ve been in the shoes of someone with a chronic illness.

One of the most recent comments came from a friend and roommate I thought cared about me. She insisted that “she had talked to other disabled people and they agreed you should do more.” According to her, if I was trying hard enough I would have asked her for more help. There are problems on so many levels here.

1. You’re Supposed to Believe Me

Firstly, and most importantly, it is so damaging to not trust people when they tell you what they physically can and can’t do. It has taken me 7 years to figure out what I can and can’t do and semi-effectively communicate to those and my boundaries around me. Communicating these things leaves me in such a vulnerable place- to judgment, disbelief, or criticism. I hate it, but I have to go out on a ledge with people when I tell them what I can and can’t do with my chronic illness.

I recently saw the quote in reference to Ehler’s Danlos, “The cruelest symptom is disbelief by doctors.” I will go a step farther and say disbelief by anyone is the cruelest symptom. The physical pain of dislocating joints, debilitating headaches, and the struggles of constant fainting are unimaginable. However, thesephysical pains don’t compare to the pain of the people you need most in your corner not believing you when you say you are struggling.

All the experts on my conditions agree that they are seriously debilitating. Still, I am constantly having to simultaneously prove how sick I am and fake feeling well.

My experience has taught me that chronic pain and chronic illness can’t be survived without an understanding support network. Nothing affects my ability to fight for a normal life more than having a support network who truly listens to and believes me. Needing to be heard, especially in the face of pain, is a human need.

2. Every Disability is Different

While being someone who deals with a chronic illness makes me more likely to understand other disabled people’s struggles than a healthy person is, I cannot understand the day to day struggles of other’s conditions.

I have never had Lupus. I don’t know what it feels like to wake up with Lupus, to shower, to cook, to eat, to clean, to sleep, or to try to hold a job/stay in school. All I know is that for people with chronic illnesses that these things are likely to be affected. It isn’t my place and I don’t have the knowledge or expertise to comment on whether people with Lupus need to “do more” or “try harder.”

It baffles me that my roommate talked about my disability with other disabled people and that they felt like how I was dealing with my disability was something that they were qualified to comment on. People with disabilities should be supporting each other, not making each other’s lives harder.

There is this attitude within people with disabilities that if they can do something everyone should be able to. Work and school are great examples. People who are able to work/ go to school act like the rest of us just aren’t trying hard enough- after all, they are able to do it. Why can’t we? They forget we are all different.

3. The Same Disabilities Affect People Differently

I have a moderately severe case of POTS. I have met people who were hardly affected by POTS and who could work full time. I have also met people with POTS who are literally unable to get out of bed. These people aren’t slackers. People who are able to work full time with POTS are not better because they “do more.” They just are affected differently by the same condition. We are all just doing the best we can with the cards we were dealt. Doing your best means we literally can’t do more.

POTS makes me faint. EDS cause frequent dislocations and constant joint pain. As far as I’m concerned, people who never faint don’t get to comment about me needing to “do more.” Neither do people who don’t have my daily dislocations, my severe arthritis, or my spinal injury. Unless you are in my terrible body living my difficult life please do shut up.

I try not to judge how other people are managing their conditions. There is no reason we should be making these judgments about each other to condemn us and our efforts as “not good enough.” I have never met someone with a chronic illness who wasn’t fighting as hard as they could for a better life. We are all trying. Don’t perpetuate the idea that we aren’t and can do more. We are doing all we can.

4. If You Aren’t Understanding I’m Not Going To Ask You For Help

The comment that she had “talked to other disabled people and they agreed I needed to do more” wasn’t the first time my roommate had said something not supportive of my chronic illness. I’ve had enough unsupportive people in my life to watch for signs that people don’t really get my chronic illness and she was showing a bunch of the signs.

I tried to explain to my roommate that I didn’t feel comfortable asking her for help because she made these unsupportive comments. She took that as me not trying hard enough.

I don’t ask for help from people who seem like they will later resent me for it or hold it over my head. I refuse to apologize for keeping myself from being hurt by these people.

5. My Disability is Personal

My disability is not yours to talk about. Not to other disabled people, not to anyone. Symptoms are personal and the struggle I have with them is incredibly personal too.

Would you want people you don’t know discussing how you managed the darkest moment or hardest struggle of your life?

How would it feel to hear an in depth critique on how you dealt with the worst parts of your life?

How would it feel if every time you met or interacted with a common acquaintance or new person you would always wonder if they knew intimate details about the worst parts of your life?

How would it feel to always wonder each and every time you interacted with a disabled person if they are the one who judged you as “needing to do more?”

Imagining complete strangers critiquing how I am dealing with my conditions makes me wildly uncomfortable. It is hurtful to think that anyone thinks this acceptable. It is painful to realize that because I have a disability, people I love don’t value my privacy.

How my disability affects you is fair game to talk about. That is the only part of my disability you get to talk about; it is about your experience. Even in these situations, details of my disability are not fair game. There is no reason they need to be talked about with people I don’t know. You can seek support without selling me out.

If you are disabled you don’t deserve these comments. If these ignorant people knew a fraction of your daily struggle they would never claim you need to do more.

You deserve more supportive and understanding people than people who say these things. So do I. So one more thing to my roommate people who say these ignorant things:

]]>https://chronicallyridiculous.com/index.php/2017/02/09/do-more/feed/01126Misconceptions About Diet & Chronic Illnesshttps://chronicallyridiculous.com/index.php/2017/02/02/1112/
https://chronicallyridiculous.com/index.php/2017/02/02/1112/#respondThu, 02 Feb 2017 23:07:40 +0000http://chronicallyridiculous.com/?p=1112The food we eat undoubtedly affects our health. Eating food with more fiber decreases the risk of colon cancer. Decreasing red meat helps lower cholesterol. People with diabetes need to eat less simple carbohydrates to manage their condition. I, as encouraged by specialists, aim to eat 10g of salt a day to better manage my POTS and faint less. However, people have a tendency to make lofty, unrealistic health claims about diet.

Anyone who has a chronic illness knows that diet is one of the most suggested changes nosy acquaintances, friends, and family make when they hear about our chronic illnesses. Some argue that they mean well, but I think the “have you tried cutting out gluten” phenomenon has a lot more to do with the people suggesting it rather than the people who have to hear it over and over.

People want to believe that diet does more for our health than it usually does. They want to believe that we have more power over our health than we do. No one, including myself, wants to believe that when we get sick we may get sick forever and that no matter how hard we work we will always be managing our condition rather than being cured. The reality that some conditions will always be a problem no matter how little gluten, refined sugar, non-organic, and GMO food we eat is a hard pill to swallow.

People don’t want to imagine that they could become permanently sick, really sick and without a cure; the idea terrifies them. So they blame the chronically ill. It is easier for them to believe we just aren’t eating well enough or trying hard enough to get better than. It is harder to acknowledge the truth that we are all just one unfortunate moment away from a lifetime of chronic illness that can be helped and managed by a healthy diet, but that will never go away.

What these people don’t understand is that the majority of people chronic illnesses have tried a lot of diets. Some of these I am embarrassed to admit as a science enthusiast, but I have tried gluten free, fructose free, simple sugar-free, vegan, paleo, juicing only, vegetarian, and a raw diet. I often get the comment that I didn’t try these diets for long enough or I just didn’t do them right. Blaming the person rather than the treatment is a hallmark of pseudoscience. If I can’t stick to a diet because it makes me feel worse it isn’t worth doing. A truly healthy balanced diet doesn’t take months to feel good, is inexpensive enough that people can afford it, and is realistic enough that people can stick to it.

Chronic illness support groups jump on this bandwagon to a hurtful extent. What diets work for some people do nothing for others, but there is a tendency to insist that if it worked for them that it will work for everyone. There is a tendency to judge others for not trying hard enough if they aren’t trying the same diet that worked for them. A lot of these diets are based on pseudoscience and can actually be really unhealthy. It is important to encourage a healthy balanced diet without judging people for eating the way they do.

]]>https://chronicallyridiculous.com/index.php/2017/02/02/1112/feed/01112Specialist Snowball Effect: When Referrals Get Out of Controlhttps://chronicallyridiculous.com/index.php/2017/01/26/specialistsnowballeffect/
https://chronicallyridiculous.com/index.php/2017/01/26/specialistsnowballeffect/#respondThu, 26 Jan 2017 11:48:47 +0000http://chronicallyridiculous.com/?p=1098It is pretty standard for a doctor to refer their patients to a specialist when they are stumped or their knowledge is limited. It is a great practice to get better more specialized help. However, when a patient has a chronic illness, especially if it is one that isn’t well known, this can be a problem. Doctors refer patients to specialists and then the specialists refer them to even more specialists. The number of specialists a patient is expected to see can increase exponentially. Eventually, this cycle snowballs out of control. I call it the specialist snowball effect.

If I went to every single specialist that was suggested to me this year I would have been to about 32 doctors. The average person doesn’t even see 32 doctors in their lifetime!

I made an approximate diagram from my fuzzy memory below. I actually think I forgot to put some of the recommended doctors on their so my number may actually be lower. You can start to imagine why seeing that many doctors may be a problem. This specialist snowball effect is draining physically, emotionally, financially, and is time-consuming.

Physical

Seeing that many doctors is ridiculously exhausting! The worse my health is that year the more doctors are suggested to me, but this also makes it harder to see to them. People with chronic illnesses already get fatigued easily. The average doctor appointment drains us even more than most people.

To begin I have to figure out transportation since I usually can’t drive. Just the drive alone is fatiguing. I deal with worsened back pain along with car sickness on longer car rides. Then, once I actually get to the appointment I still have to stand in line to check in, wait (sometimes for hours) on uncomfortable chairs, and do tests that make me feel miserable. Then I usually have to go to the pharmacy and get my prescription filled. Which means more driving, more standing in lines, and more sitting. Often the days I go to the doctor I have too little energy to do anything else the entire day.

Emotional

If each specialist was helpful it might be worth it to see 32 in one year. However, the reality is that the majority of my doctor appointments don’t improve my health or offer realistic, helpful solutions. Waiting months for an appointment to talk to a specialist then still having to explain the basics of your condition is emotionally draining.

“What is POTS again?” -the super special specialist I waited 7 months to get into

Sometimes these new doctors can be straight up rude, neglectful, or cruel. Chronic illness means having to prove how bad you are feeling during every appointment and worrying what judgment this new doctor will pass on you. Some patients get anxiety or depression from these interactions which is truly understandable. Anyone would feel desperate when the one person who could help instead turns them away or belittles their problems.

People also find that retelling their health history over and over means reliving traumatic events over and over. For example, I often feel haunted by the blood clot that nearly killed me and destroyed my dreams of being a doctor. I also had one surgery where I stayed awake despite anesthesia and was in horrific pain for the duration of the procedure. The doctor didn’t believe I was vividly awake despite my screaming. I still get nightmares. I hate remembering these experiences. To do so I have to recall the doctors who wouldn’t take me. I have to remember how alone I felt because they didn’t believe me. I have to remember the physical pain and the emotional pain of nearly dying because no one would listen to me or take me seriously- doctors and loved ones.

It has gotten easier now that there are a few years between now and those experiences. However, it never fails to make me sad and anxious when I recall it that my new doctor may do the same and not take my symptoms seriously or listen to me.

Time

It is already insanely difficult to hold down even a part-time job with a serious chronic illness. When constant medical tests, new doctors visits, and physical therapy are added to the equation patients have to have an incredibly understanding boss to pull off keeping a job. Unfortunately, there are very few bosses that are understanding of chronic illness.

On average, I have to set aside two hours for a doctors appointment or three if I have to get a prescription filled afterward. For fancy specialists, I sometimes have to set aside 4-5 hours! And that is without anything going wrong. When you see 32 doctors a year there is a higher likelihood of scheduling errors due to just the sheer numbers of appointments made. I’ve had front office professionals lose my appointments, forget about me, or have me scheduled for a time I would never schedule an appointment for. At a recent back specialist, I had to wait three and a half hours just to see a physician assistant.

If I saw every doctor I was supposed to twice a year (most I would see far more than this) and physical therapists once a week (which I would also usually see more than once a week) I would be at doctors appointment about 14 straight days and nights this year.

Keep in mind, that doesn’t even account for all the medical tests that each doctor would order. This number doesn’t account for travel. It also doesn’t account for the time patients are expected to spend on the phone on hold, being forced to be the inefficient middleman between their doctor and pharmacy, or simply trying to reach their doctor.

Most jobs don’t even allow 14 sick days, and obviously, I couldn’t be at doctors appointment 24 hours straight a day! The specialist snowball is out of control and swallows patients like me whole leaving them with little time outside of healthcare. It is simply unrealistic to expect patients to spend 330 hours a year to see specialists.

Cost

Without insurance in the USA, the cost to see 32 specialists twice in one year would be around $39,000. That is the cost before accounting for transportation, medical tests, and medication. Most people with serious chronic illness can’t even make $39,000 a year let alone $39,000 plus enough money for food and rent. Referring patients to this many specialists a year not only guarantees they cannot hold down a job, it also guarantees they will go into deep debt quickly that they will likely not be able to climb out of.

Even with insurance, seeing 32 doctors a year can be too expensive for patients to be able to afford medical care, food, and a place to live. A lot of deductibles are $10,000+ which really adds up year after year. Even patients in countries with socialized medicine can have trouble paying for a lot of doctors appointments due to transportation and losing out on money while working.

Patient’s Choice

A few years ago I had a breakup during which my ex-boyfriend claimed I wasn’t trying to manage my condition because I didn’t see every doctor I was referred to. He implied that my poor health was just due to me not trying hard enough. It was really hurtful that he didn’t trust my judgment about what I could handle emotionally, physically, and with my resources at the time. He didn’t trust my judgment that seeing those specialists, ones that I would have had to explain my condition to, wasn’t going to help me. Sometimes the right choice is not to see every specialist and sometimes it is. That needs to be the patient’s choice.

The choice in what doctor someone sees varies for every person and only the person being treated and a doctor they trust should have a say in it. I hope that this article has helped to clear up why someone might not go to see all the specialists suggested to them.

I think this is important for doctors to realize the consequences of the specialist snowball on chronically ill patients before referring them to a million specialists. At a certain point, seeing more specialists isn’t helping their patient. It is making it so they can’t hold down even a part-time job. They live in doctor’s offices but don’t get very far in managing their conditions or increasing their quality of life. Their quality of life is worse because they are getting no fun and are drained- emotionally, physically, and financially.

]]>https://chronicallyridiculous.com/index.php/2017/01/26/specialistsnowballeffect/feed/01098When Your Doctor Deserves To Be Dumpedhttps://chronicallyridiculous.com/index.php/2017/01/19/dumped-doctor/
https://chronicallyridiculous.com/index.php/2017/01/19/dumped-doctor/#respondThu, 19 Jan 2017 12:06:36 +0000http://chronicallyridiculous.com/?p=1076Finding the right doctor is a daunting task- especially when you have POTS. I think it is important to change the way we view doctors when you have a condition that the average doctor knows so little about. Instead of going to a doctor and taking their way as law, it is best to find a doctor and treat your appointment like an interview or a first date. Some doctors hurt more than they help and you deserve better. Dump them.

Like most people with POTS, I have encountered a ton of doctors that have made my life much harder. I’ve been told that my deadly blood clot was the stomach flu. I’ve been told that my POTS wouldn’t affect me if I stopped seeing myself as sick. I’ve also had doctors tell me it is my fault I’m unhealthy because I’m not trying hard enough. I’ve been called crazy, a liar, hysterical, and a drug- seeking junkie.

For so long I let these doctors dictate my life. I believed them over actual POTS experts and over myself. My friends and family doubted me and my suffering because of what these doctors said. I lost out on so much support. It got to the point where I constantly doubted myself. I blamed myself for all my symptoms. I believed that the problem was me- even when I did everything the doctors told me to.

At one point I was eating 12g of salt, wearing compression constantly, drinking 3L of water, practicing biofeedback, taking all my recommended meds (even when I had terrible side effects), and working out for at least a half hour every single day. It helped some, but I was still fainting, getting infections constantly, in so much pain, constantly dizzy, always foggy, and was getting terrible daily migraines.

Because my doctors had given me, my family, and my friends the idea that I had 100% control of my condition and making it better I got to the point where I started to hate myself. I was so hard on myself every time my POTS flared because I had been told so many times that it was my fault.

This expectation that I needed to will myself better irreparably harmed both how I saw myself and my relationships with the people who should have been supporting me through the worst part of my life.

Now I am in a different place and far more happy. Instead of taking their word as law, I keep seeing the great doctors and dump the rest. I understand that lifestyle changes help, but there are many parts of my condition I can’t control. I see that I don’t have to be around people who make my life harder.

I have only seen two doctors who knew more about POTS than I do with all the research I’ve had to do. It has been 8 years and I’ve seen hundreds. I realize that I am the only expert on how I feel. Instead of feeling like I have to prove my symptoms to a doctor who might not believe me I now expect them to prove themselves to me. I don’t expect every doctor to be an expert or even know that much about POTS. Now I expect them to be able to really listen to me and the willingness to look up and research the things they don’t know.

If the doctor isn’t willing to learn or believe my symptoms I move on. It is frustrating to see more doctors, but absolutely worth it to not have my symptoms belittled every time I have to have a doctors appointment.

So my advice is to stop trying to make terrible doctors listen. Stop blaming yourself for things you cannot control. Just do the best you can and find doctors who see that as enough. The problem is them, not you. At least in the US, you are paying for their service. You wouldn’t tip a waiter who was cruel to you. You wouldn’t go back to a hairdresser who didn’t listen and gave you a buzzcut when you wanted a trim. So why go back to terrible doctors (*unless you have to for some other reason)?

Fire them! Dump them! It is so satisfying. Tell them why. It might help patients after you. Don’t be afraid to be assertive and advocate for yourself and your condition. Don’t let them push you into second-guessing how hard you are working for your health. Don’t let them fool you into blaming yourself for what you cannot control.

*This advice obviously doesn’t apply to people in extremely small towns or who are only able to get to one doctor. That is a whole different struggle.

]]>https://chronicallyridiculous.com/index.php/2017/01/19/dumped-doctor/feed/010764 Problems With The Pain Scalehttps://chronicallyridiculous.com/index.php/2016/12/28/4-problems-with-the-pain-scale/
https://chronicallyridiculous.com/index.php/2016/12/28/4-problems-with-the-pain-scale/#commentsWed, 28 Dec 2016 00:26:10 +0000https://chronicallyridicilous.wordpress.com/?p=1013My life has been filled with a lot of pain and many different types of pain. In the past 7 years, I have not had a single day without pain- not one. I have good days and bad days, but even the good days are filled with pain. Aside from the pain itself, the pain scale is one of the banes of my existence.

1. It Doesn’t Work For Chronic Pain

Not only is it a pretty terrible scale for measuring pain in the average person, but it is even less effective for people with chronic pain.

I’ve had a lot of people when talking about pain, make the comment “but you’re used to it.” This isn’t exactly true. My pain is actually worse and more unbearable than it has ever been before. Pain doesn’t hurt any less because you are used to it. What you really get used to is living with it. You get used to pretending you don’t have pain, using coping methods such as distraction, and hiding the pain.

If I had the average response to dislocating a joint that the average person did I would be crying, distorting my face, and screaming far too often to navigate this world. So I’ve learned to breathe through it and even smile. Only people very close to me can even tell that something is happening- and often they can’t even tell. Developing this coping mechanism is so necessary for living with chronic pain and such a problem at the doctor’s office.

I have had at least a dozen kidney stones. The pain of a kidney stone is slightly worse than my average Ehler’s Danlos pain, but not enough that I can easily shed my coping mechanism of hiding my pain. One night I began to pee blood and couldn’t keep fluids down so I went to the ER. I told them I had a kidney stone- I know full well what they feel like by now. The nurse told me I couldn’t have a kidney stone, “Even giant footballer men roll into the fetal position from kidney stones.” They did a scan and, of course, I had a large kidney stone. I eventually got treatment, but first was told I wasn’t in enough pain. It was infuriating and it has happened more than once.

It has gotten to the point where I almost feel like I have to try and visibly show the pain I feel inside, but it is still so difficult.

2. It Isn’t Standardized

Another problem is the scale means something different to everyone. I’ve been told 10/10 is the worst pain I’ve ever felt and also told that 10/10 is the worst pain I can imagine. These are far different measurements! For the same pain, I would rate it as a 8 on the first scale and a 3 on the second (I can imagine some horrific pain).

3. We Can Only Compare Pain- Not Imagine It

Generally, we can only rate our pain based on comparisons to other pain we have actually felt. That is the best way to understand someone’s pain. However, many people are at the extremes- they have either had a fairly pain free life or have experienced immense pain. Two people’s 7/10 may be wildly different. The scale does not work as a stand-alone tool without considering the pain patients have felt in the past.

4. The Scale Is Used Against Patients

Another problem with the pain scale is that it is commonly used by nurses and doctors against the patient. If you answer too high on the pain scale and they can’t see the cause of your pain, they will assume you are lying to get drugs. If you answer an 8 and then check messages on your phone (even though distraction is one of the best solutions to pain) they will assume you are lying. If you answer too low they won’t take you seriously. Instead of using the scale to help treat patients it is often used to hurt patients.

So if the pain scale is the problem what is the answer? Medical professionals need to listen to their patients when they describe their pain and take a look at their medical history. The pain scale needs to be taken with a grain of salt when used and needs to be standardized. Medical professionals need to make up their minds. What is a 10/10? Decide and then stick to it!

]]>https://chronicallyridiculous.com/index.php/2016/12/28/4-problems-with-the-pain-scale/feed/110138 Ways Alternative Medicine Hurts People With Chronic Illnesseshttps://chronicallyridiculous.com/index.php/2016/12/18/8-ways-alternative-medicine-hurts-those-of-us-with-chronically-illnesses/
https://chronicallyridiculous.com/index.php/2016/12/18/8-ways-alternative-medicine-hurts-those-of-us-with-chronically-illnesses/#commentsSun, 18 Dec 2016 09:15:51 +0000https://chronicallyridicilous.wordpress.com/?p=981Since the moment I first got sick the suggestions people gave me were unreal. The suggestions began with “just needing to pray harder” and gradually made their way to biofeedback, grounding, crystals, supplements, and more. I honestly am not sure which was worse, but I do know that suggestions and trying alternative medicine have only made a hard life with chronic illness harder.

1. The Patient Gets Blamed When a Treatment Doesn’t Work

When a doctor gives me a medication and it doesn’t work I don’t get blamed for the failure. However, when I try an alternate medicine I nearly always do get blamed for the failure. When it was biofeedback, I wasn’t trying hard enough or practicing enough. When it was acupuncture, I wasn’t trying to relax hard enough. Even with supplements, I just hadn’t waited long enough for the benefits (no matter how long I waited).

It is hard enough to be blamed for a treatment not working when you are trying your best. It is even worse when this attitude gets perpetuated beyond your treatment and into the rest of your life. Sometimes when I tell people the conditions I have I get the response “Well are you trying _____” (Insert any alternative medical treatment). Sometimes it is implied and sometimes it is explicit but the underlying question is always there- why aren’t you trying everything you can?

The reality is that people with chronic illnesses don’t owe it to anyone to try treatments not verified by science. The attitude that we aren’t trying hard enough when we don’t try whatever alternative treatment is hurting people. It has kept me from getting the support I need from my friends and family- I was never trying hard enough to get better so in their eyes I didn’t deserve their support.

2. Alternative Medicine Is Dangerous

There are many reasons using treatments only verified by science is so important. One reason is safety of a treatment is verified. The treatments benefits must outway the risks for it to go to market. However, alternative medicine doesn’t need to go through the same thorough screening. People with pre-existing conditions can be the most endangered by this lack of safety.

I often hear “But it is natural so it is safe” or “I don’t want to put all those drugs in my body- I prefer natural treatment.” What so many people fail to realize is that natural does not mean safe.

So many natural things in this world are dangerous- berries, mushrooms, and poison ivy for start. The thing is so many of the medications on the market come from nature and have been improved upon so they are safer and more effective. One example is aspirin, which initially comes from willow bark. There are dangers from the completely natural willow bark and aspirin the same. The difference is aspirin has been tested and put into the safe, same dose in every bottle with dosing specifications included. The risks are assessed and addressed whereas natural products usually only claim they are natural and the public assumes that means safe and doesn’t question the risks of the treatment further.

3. Costs

Alternative medicine profits off people with chronic illnesses. I’m not going to try and argue that “big pharma” doesn’t profit off us being sick as well. However, when we pay for medication we are paying for something that has been proven to be effective at least some of the time. With good insurance, these treatments are likely to be at least partially covered. With alternative med people pay, and they pay big, for something that has not been proven to help with their condition- or any condition at all.

People with chronic illnesses already have to deal with crippling medical debt and are just desperate enough to try anything- any crazy alternative medicine no matter how small the chance there it has of actually helping them. People know this and they benefit off of it. They take advantage of the desperate.

4. It Assumes Laymen Know More Than Doctors

There is a reason we should only trust medical professionals to treat medical conditions. The human body is infinitely complex and so many things can go wrong. Doctors and pharmacists spend a large chunk of their lives in school learning how to treat patients better and minimize risks. But alternative medicine professionals? Anyone can become one. They don’t have to know much about the human body or even anything about the condition they claim they can help with.

5. Patients End up Constantly Chasing Hope All The Time

Having a hope certainly isn’t a bad thing. Having false hope in a treatment that will cost you hundreds, if not thousands, and let you down is a bad thing. A lot of people with incurable, chronic illnesses, if not all, go through a time similar to the bargaining stage of grief. They try anything- no matter how slim of a chance it has of working. Alternative medicine con men know this and they take advantage of it. They promise cures to our chronic conditions. They are in the business of selling false hope.

False hope hurts. Putting 50+ hours into biofeedback that claimed to cure (or hugely improve) my POTS and getting so little out of it. I was crushed by letting myself hope I could get better and then continuing to be sick no matter how hard I tried. The biofeedback technician blamed me; I blamed me. Even worse, my loved ones bought the false claims the biofeedback technician made. And when I wasn’t cured? They blamed me too. It was one of the darkest times of my life. The disappointment consumed me.

6. It Claims To Fix You, Not To Manage Symptoms

Trumped up claims of efficacy are a hallmark of alternative medicine. All the medications from a true doctor I took only claimed to possibly manage the symptoms of my conditions. However, alternative medicine practitioners claimed that they could cure my incurable illness or basically make all the symptoms disappear.

My conditions are incurable. Cutting out gluten, doing biofeedback nonstop, becoming vegan, yoga, walking, crystals, needles, etc. is not going to make an incurable illness curable. If the cure was truly found actual scientists and medical professionals would be all over it. Alternative medicine conmen making these outlandish claims produces false hope, keeps people from learning to live with their conditions, and makes conditions harder to understand. That leads me to our next point.

7. Pseudo-experts Make Understanding Conditions Harder

Education on conditions is important to people being supportive. When alternative medicine conmen enter the conversation they dilute the available information with false claims rather than facts. This makes the condition more difficult to understand for the patient, medical professionals, and loved ones. Pseudoscience, therefore, makes the lives of patients much more difficult.

For example, I have had doctors tell me that my conditions would be cured by cutting out inflammatory foods. This diet has no evidence to back it up but somehow made it into my doctor’s education on my conditions. Getting suggestions that indicate a fundamental misunderstanding of my condition (that it is incurable) is frustrating and disheartening.

For other examples, you only have to look as far as support groups. There is so much pseudoscience and misinformation that many patients don’t even understand the basics of their condition.

8. Alternative Medicine Simply Does Not Work

There have been many studies into alternative medicine and the results are conclusive- alternative medicine simply does not work. There is a common joke in the science community: What do you call alternative medicine that works? Real medicine.

So before you consider the next random treatment suggested to you- check it out first. Is there any good evidence that it helps people with your condition? Is it worth the money, the false hope, the risk, or the blame you will likely receive when it fails?

]]>https://chronicallyridiculous.com/index.php/2016/12/18/8-ways-alternative-medicine-hurts-those-of-us-with-chronically-illnesses/feed/15981To The Park Ranger Who Questioned My Disabilityhttps://chronicallyridiculous.com/index.php/2016/12/12/to-the-park-ranger-who-questioned-my-disability/
https://chronicallyridiculous.com/index.php/2016/12/12/to-the-park-ranger-who-questioned-my-disability/#commentsMon, 12 Dec 2016 09:49:02 +0000https://chronicallyridicilous.wordpress.com/?p=977I love camping. It one of my favorite things to do and I wasn’t about to let my stupid flesh prison keep me from doing it. So I organized a camping trip with 6 friends.

We went to Saddlehorn Campground, just a little bit out from Grandjunction, CO. I chose it because it had cemented paths and disability spots. It was absolutely beautiful as well.

We got there Friday late afternoon. Within 5 minutes getting there a man rode up on his bike.

“Why are you parked in a disability spot,” he accusatorily asked me (my official placard hanging in the window).

In immense pain from the 4-hour drive, I responded: “because I’m f**king disabled.”

He stood around and dumbly added, “but I’ve seen all y’all walking around.”

At this point I wasn’t alone in my anger, my friends chimed in. “Go away” “mind your own business” they yelled while I yelled, “just because I can walk tiny distances doesn’t mean I’m not disabled!”

He angrily, and obviously not convinced, jumped on his bike and rode off. I tried to not let it bother me, but it did. I was already gnawing at me when the park ranger came to our campsite.

“I need to see whatever proves you are disabled.” Obviously, my new friend had tattled on me. While she was saying this my disability placard hung visibly from the rearview mirror of the car.

My partner stood up and ushered her to look at the placard- literally right beside her. She walked away huffily as well. No apology for her hugely inappropriate behavior. Nothing.

I chose Saddlehorn for its disability friendly campsites and was harassed instead of finally easily able to enjoy camping. However, apparently, you have to be visibly disabled to not be harassed by other campers and staff.

Newsflash Saddlehorn: not all disabilities are visible. Not everyone who needs those spaces uses a wheelchair 100% of the time. Disability placards exist and aren’t easy to get without an actual condition that you need it for!